Reconnect with Lynn and gain insights on the nuances of CIDP (S5 replay)

Warrior: Lynn Rogers
AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
HSCT: hopeful 
Superpower: widened lens

Have you ever worried about asking people for help when their investment isn’t a sure thing? How do you define barriers to treatment for your autoimmune disease?

As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients.  

Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn’s efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Clinica Ruiz 
https://hsctmexico.com

Check-in with Joceline and celebrate her journey to HSCT in Moscow last year (Ep. 80 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience? 

When we first met Joceline in Season 6, she shared concerns over the COVID variant in the UK that had delayed her acquiring a schedule to begin HSCT at the AA Maximov hospital in Moscow. Nearly one year since we last spoke, Joceline celebrated her one-year stem cell birthday and joined us to share details about how she finally made it to Moscow, through pre-testing, and underwent the transplant while connecting with other patients to pass the time before isolation. Tune in to hear how she embraced the chemo, despite unexpected side effects from the chemo, including dizziness and immediate onset of menopause. Learn more about how isolation did not go as planned for Joceline, and how she established gentle boundaries to support herself through the unexpected depression that ensued during isolation.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Learn from HSCT hopeful Javor and all he gains through consistency and positive mindset (Ep. 73)

Warrior: Javor Milanov
AI: Relapsing Remitting MS
HSCT: Scheduled in March 2022

Superpower: Consistency

How well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass?

After his diagnosis, Javor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a time. He experienced terrible side effects after steroids and trying an initial disease modifying therapy, so returned home to Bulgaria for a long respite. Rest, reduced stress, and time with family and friends  helped reduce his symptoms and after six months, he returned to Canada and began noticing his disease becoming more active. 

Refusing to accept an incurable disease as his destiny, Javor made radical changes to his diet and lifestyle to become as healthy as possible. Tune in to learn more about Javor’s experience with the Wahl diet, mesenchymal stem cells in Panama, how he leaned on the discipline of swimming to keep his motivation and disposition positive, and his ability to anticipate (rather than react) to what is on the horizon, including his plans to pursue HSCT in Russia.  

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Join Mike along his newfound journey to HSCT and be inspired by his humble fortitude (Ep. 71)

Warrior: Mike 
AI: Multiple Sclerosis
HSCT scheduled for January 2022
Superpower: fortitude

How do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease?

Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced reversal of his symptoms after a round of steroids and figured the disease would be manageable. Fast forward ten years and suddenly Mike realized the disease had actually been simmering just beneath the surface and after a severe hurricane, began more noticeably interrupting his daily functioning. 

After trying a couple of different disease modifying therapies, Mike was introduced to the idea of HSCT in social media advertisements for the Selma Blair documentary, and began exploring it as an option just two months ago. Tune in to learn more about the various ways that Mike has felt supported along his journey despite the questions and concerns that any HSCT Hopeful has also considered. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Learn with Amy as she prepares for HSCT and be inspired to move beyond judgment (Ep. 70)

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: scheduled for October 2021
Superpower: Thinking

What is your response to the judgment of others? To what extent do you control your mindset? Are you committed to eliminating negativity?

When Amy was first diagnosed with multiple sclerosis, she not only struggled to understand the disease, she ended up struggling with a storm of negative side effects from the first medication she tried. Having a friend who went through HSCT five years ago, tune in to learn more about why Amy is just now pursuing HSCT, how she is navigating the opinions of her doctors, and how she is committing to making the best decisions for herself and her family. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Enjoy Joceline’s reflections and find compassion for just wanting to feel normal (Ep. 62 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: soon in 2021?
Superpowers: doing nothing

How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?

After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis. 

Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Bates Natural Vision Improvement Exercises
Radical Acceptance by Tara Brach
Ahna Crum
Roger McDougal
MS Tripping on Air
NHS Expert Patients

Join Christy on her way to Monterrey and learn more about the power of connections (Ep. 60)

Warrior: Christy Miller Kuziensky
AI: Multiple Sclerosis
HSCT: February 2021 in Monterrey
Superpowers: patience and trust in Clinica Ruiz

Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?

With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy.

Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with others.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Pause to reflect and find gratitude with our own ‘zen’ Jen and friend, Sara Leah (replay from S1)

Warriors: ‘Zen’ Jen & Sara Leah
Snowflake: RRMS
HSCT: October 18, 2017, Northwestern Memorial Hospital
Superpower: Zen

Do you embrace life’s challenges with open arms? One step at a time? As you find your way along your journey, do you pause to reflect in the moment and express gratitude for those who are along with you?

Learn more about the journey of our very own ‘Zen’ Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview protocol, enjoy this conversation from the lens of someone curious to know more about HSCT, in celebration of Jen’s one-year HSCT birthday.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.

Resources:
haltmyms.com
hsctwarriorspodcast.com
HSCT at Hoxworth Blood Center, University of Cincinnati
HSCT at Clinica Ruiz, Mexico


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Support HSCT hopeful DeWayne, as he becomes the first autoimmune transplant in Cleveland (Ep. 52)

Warrior: DeWayne Durr
AI: Relapsing Remitting Multiple Sclerosis
HSCT: scheduled for September, 2020
Superpower: prayer and understanding

How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?

After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration to be considered for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. 

Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Wahl’s Protocol
Rooftop Prayer Warriors